Foundation for Sarcoidosis Research issued the following announcement on July 15.
The Foundation for Sarcoidosis Research (FSR), the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients, is proud to announce the formation of their new Patient Speakers' Bureau. This bureau consists of 14 experienced and trained sarcoidosis patient advocates who will share their personal stories to advocate for FSR and raise awareness for sarcoidosis. Members of the FSR Speakers' Bureau underwent a full training program with Living Proof Advocacy, an organization that provides coaching, consulting services and coaching certifications, in order to utilize their skills to speak on a range of topics related to sarcoidosis. The training program was sponsored by Mallinckrodt Pharmaceuticals. FSR's Speaker Bureau members have been featured in national publications, on national television programs, have served as panelists and keynotes at national conferences, and have shared their stories with federal and local legislators.
"This is a very proficient group of patient advocates who each have their own mix of manifestations and personal stories about their sarcoidosis diagnosis," said Mary McGowan, CEO of Foundation for Sarcoidosis Research. "Their inspiring stories and insightful reflections add a vital voice to improving the understanding of the lives and experiences of chronically ill patients. Each of their finely crafted stories help to build understanding, awareness, and provides depth to our understanding of the challenges of triumphs of living with a complex rare disease."
Topics the FSR Speakers' Bureau will discuss with the public include the challenges of living with a rare, chronic, immunocompromising illness, COVID19 and being immunocompromised, improving patient access to qualified care and effective treatments, and improving doctor patient communication. Members can be requested through the FSR website to share their unique stories to a variety of different stakeholders and communities, including patients, industry, donors, physicians, media, and legislative and/or policy makers.
The FSR Speakers' Bureau members include Cheryl Bradford, Brandi Cleaver, Garrie Farrow, Yvonne Holt James, Jim Kuhn, Mary Morlino, Michael Patterson, Jessica Reid, Tara Sims, Rebecca Stanfel, Sammy Suriani, Rhonda Underhill, Della Washington and Leanne West.
To learn more or request a member of the FSR Patient Speakers' Bureau to speak at an engagement, please visit https://www.stopsarcoidosis.org/fsr-speakers-bureau/.
About Sarcoidosis
Sarcoidosis is a rare inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure.
About the Foundation for Sarcoidosis Research (FSR)
Established in 2000, The Foundation for Sarcoidosis Research (FSR) is the leading international nonprofit organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients. Since inception, FSR has fostered over $5 million in sarcoidosis-specific research efforts and has worked diligently to provide resources to thousands. For more information and to join our community, visit www.stopsarcoidosis.org.
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